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Making Decisions

… I generally categorize patients in one of four classes: (1) patients who completely trust their doctor and want the doctor to decide the treatment, (2) patients who want to understand the possible diagnoses and treatments but who want the physician to choose the best, (3) patients who want to understand the possible diagnoses and treatments and make the decisions about treatments for themselves, and (4) patients who want to understand and want to work with the physician to reach a mutually agreed upon decision. I think that the physician should try to understand which category best fits the patient or parents and then try to work with them to reach a mutually agreed upon course of treatment. This is a tall order, I realize, given the generally limited amount of time of interaction between patient and physician.

In the past, I think I was the first type of patient. Which is bad. In the rare instances that I got sick, I’d go to the doctor and do whatever he said I needed to do to get better — to the extent (and I’ve said this before) that if a prescription was written, the doctor would tell me what the medicine was and how to take it, but all I really heard was “take this piece of paper to the pharmacy and follow the directions on the bottle(s) they sell you. Come back in a few weeks.”

Things are different now. I’m more of the second type listed above. I always know the names of the prescriptions I’m given. I write them down so that I still have that information after I hand the prescription to the pharmacist. I know the strength I’m supposed to get. I know how and when I’m supposed to take the medicine. I know why I’m supposed to take it. I want to know everything I possibly can about my diagnosis. The fact that I want every single detail I can get doesn’t mean that I don’t trust my doctor to choose the right treatment. I trust my doctors, but I want to understand the disease.

In fact, I think that learning about a disease can influence the trust patients place in a doctor. Everything I’ve learned about my disease makes me trust my doctor that much more, because I’ve learned what standard treatment is for my condition. When a doctor recommends following a typical treatment plan, it gives me confidence that the doctor knows what he’s doing. It builds trust.

When a doctor doesn’t follow a typical treatment plan, I have to wonder why. That might have been part of the conflict with my first rheumy. The first time I left his office I had a diagnosis but no information. When I started reading about RA, everythingrecommended early, aggressive treatment with DMARDs. I had a prescription for an NSAID, but no DMARD. That didn’t really make me think he knew what he was doing. I remember another appointment when he told me the names of three different medicines (none of them DMARDs) and asked which one I wanted to try. I don’t know anything about any of these medicines. I don’t know what they’re supposed to do. I don’t know side effects. I don’t know how much they cost. I don’t know benefits or drawbacks of any of them. Exactly how am I qualified to make any decisions about this? And why aren’t we looking at DMARDs? We wasted months that I can never get back. Even later, after a DMARD was added, I never fully trusted that he was doing what was best.

Doctors talk about patient compliance. Do they understand how difficult it is to be tied to pill bottles? Patients with a chronic condition need to understand what’s going on. Only when I understand the course of my disease do I realize how important it is for me to make time to exercise and to arrange my life around my meds. Understanding is crucial. It’s what makes the difference in my being willing to follow a long-term treatment plan. It’s what gives me confidence that my doctors’ treatment choices are trustworthy.

What do you think?

In a future post, I want to look at patient-education options. Given the limited amount of doctor/patient time, how can patients learn what they need to know?

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11 thoughts on “Making Decisions”

I’m that last one — I always go in with my lists. One is symptoms and how those relate to current diagnoses and what else they might be (with question marks to ask his opinion of course). The next is possible meds to address the symptoms along with side effects and how these might interfere or interact with my current meds and what meds I should drop if I start new meds. The next is anything else that’s going on that could be related my questions.

My docs (there are two) love it when I come in there armed with information. We have a professional conversation — they listen and I listen — then we decide what to do next.

Four previous docs wouldn’t listen. They just handed me a prescription and that was that. I trashed the prescription right in the examining room in front of one doc. He looked at me like I was nuts and said “why’d you do that?”

I said “well if you don’t know the answer to that question then you’ve got no business giving me a prescription in the first place. I won’t be back and I’m contacting the insurance company NOT to pay for this so-called office visit. Good bye” and I walked out, leaving him and his nurse standing there with their mouths hanging open like a couple of dunces.

Which they were.

I just don’t put up with crap from doctors. Period.

I also tell the receptionist when signing in to see a new doc that I only wait 15 minutes then I leave and tell the insurance company the appt was cancelled and not to pay. I’m always inside seeing the doc within 15 minutes.

I also find that I can trust my doctors more the more I know about my condition. I’m currently in a situation in which I have already undergone a surgery that was encouraged by two of my doctors. I talked with them, read widely, and thought I made the best decision in going ahead with it. Now I have a new doctor who is saying he probably wouldn’t have made that choice. I’m finding it incredibly frustrating.

You’ve given me something to think about. What kind of patient do I – and should I – become when my doctors themselves aren’t sure what’s going on, and when they don’t agree amongst themselves?

I’ve already had the surgery and had the defibrillator implanted. And I do believe I made the right decision – I made it with the help of two really amazing and well-respected doctors. When I saw the new doc, he launched into all of the complications that could go wrong in future with the defibrillator, and said that he might not have encouraged me to have it implanted.

I’m learning how very little is known about arrhythmia disorders, which is very frustrating but also helps me say to myself, well, I made the best decision for myself with the knowledge we have. It still left me feeling kind of rotten, though. I have two more cardiology appointments in the next month so I want to try to talk through it some more with them.

What a wonderful post. I am so glad that RA Guy shared this with us this morning. I am seeing my Rheumy a week from today for my every six week appointment and I will definitely be thinking this post through a lot this week to figure out where I am and where I want to be in my doctor-patient relationship. I know it has changed since my previous caregiver left this office but I haven’t been able to put my finger on the why/how. This post has sparked something that will help me figure this out.

I think I’m number 4 but nobody’s given my consultant this list so he doesn’t KNOW I’m number 4. I wonder how I go about explaining?

I was lucky to get DMARDS early, but at a very low dose and after faffing about with the wrong ones for a while. (I don’t blame the doc for this, but I do blame him for then saying that’s because I didn’t want try MTX, when in fact he’d steered me away from it!) It’s now gone up from 7.5mg to 15mg a week, but latest research seems to suggest that it should have been hit hard and fast with a higher dose to start with. Then again … how reliable is the research? It’s so hard to know the rights and wrongs, however much you read.

Reliability of the research is key. Hard when the research is contradictory.

Unless your doctor prefers #1 (have you ever read #1Dino?), it might not matter which of the other three directions you lean. All the other options require explanations so that you understand what’s going on. With both #2 and #4, the patient will understand what’s going on. With both of these, the patient and doctor will be in agreement on the treatment. The only difference is that with #2 the patient wouldn’t express a preference but with #4 the patient would. If the doctor with years of specialized training doesn’t have a reason to prefer one treatment method over another, why would it really matter what the patient picks?

If one treatment is clearly superior to another, yet the patient prefers a different treatment than the doctor, then it’s not #4. It’s either #3 where the patient decides regardless of what the doctor thinks, or it’s #2 where the patient goes with the doctor’s decision.

“Doctors talk about patient compliance. Do they understand how difficult it is to be tied to pill bottles?”

I hate the word “compliance” because it assumes a patient is just supposed to comply with anything I say. I prefer to call it “cooperation,” because this leaves open the possibility that it isn’t just the patient’s fault that they don’t do what I recommend. Usually “poor compliance” comes from a breakdown in communication.

I must admit I prefer #4 patients. There are very rarely “right answers” in medicine. There are a lot of choices with pros and cons. If a patient cannot be a part of the medical decisions I wonder if I’ve done a good job educating them.

It seems (correct me if I’m wrong) that the difference between #3 and #4 is that in #4, the doctor will always agree with the patient’s decision but with #3 the doctor might disagree with the patient’s decision. So it would be possible for the doctor to significantly influence the patient’s decision-making process. If so, then how much difference is there between #2 and #4?

I think the only time I’ve ever been offered a choice is mentioned above – “pick a drug” without any information to guide the decision.